The Illinois Community Care Program In Rockford Is A Joke

In Illinois, there are two programs for disabled persons to provide them with help at home.  One is DORS, and it’s for those under age 60.  DORS is administered through the Illinois Department of Human Services and provides services to individuals with disabilities so they can remain in their own homes and live as independently as possible.    DORS, personal assistants are selected, employed, and supervised by individual customers.  That means the personal assistant (PA) gets to meet the client and see the premises before they agree to take the job and/or before the client agrees to hire them.

For those age 60 and over, there is the Community Care Program which is administered through the Illinois Department on Aging.   Under the Community Care Program, home healthcare agencies (HHA) apply with the state government for approval.  The agencies then hire “home makers” which for all intents and purposes perform the same work as personal assistants under the DORS program.

HHA’s train by having applicants watch 16 hours of videos.  The agency I am assigned to includes in their recruitment material, “No previous experience required”.  That speaks volumes, clearly indicating that clients, many of whom are in pain or feel lousy and need assistance, are expected to provide on-the-job training.

Before age 60, they seem to think that disabled persons are capable of interviewing and orientating persons who are going to be in their homes.  The attitude I have experienced from HHA agencies and various personnel with the Illinois Department on Aging, is that once people live to see their 60th birthday, they are stereotyped as elderly patients whose minds have stopped functioning and who can be disregarded as long as they are patronized.

From March 19th through May 30th,  I’ve had 3 or more hours each day, Monday through Friday, consumed by homemakers and/or the agency that assigned them.  It turned out to be the most stressful and inconvenient thing I’ve ever experienced.   Geez!  Homemakers were expected to make my life easier.  I should be enjoying evenings and weekends instead of being exhausted and at times, traumatized.

My experience with the Community Care Program lasted less than 3 months but seemed like a year and thus, the reason this post is longer than most posts that I write.

My expenses increased. I’m out of money to replace a vacuum cleaner that was taken apart by a homemaker without my approval.  It stopped operating properly after she put it back together.  Another homemaker stole my everyday silverware, service for 6, leaving me with 2 salad forks, 2 regular forks, 2 spoons, 3 soup spoons and 3 knives.  She also stole my salad plates, leaving me with two.

The agency that sent them to my home said they are fully insured and bonded and was mailing me a claim form.  That was 3 weeks ago.  I’ve not received it yet and probably won’t.

On May 30, 2019, I told the agency that I was withdrawing from the program.  The manager tried to convince me otherwise and I responded that if I was to continue, that I would need to have a surveillance system installed in my kitchen and basement to record thefts by his employees.  His response?  He recommended a surveillance system.  He didn’t get it.

My water and electric bills increased.  It became necessary for me to purchase double the amount of toilet paper, paper towels, and laundry detergent.  I don’t know if one homemaker had perpetual runs or was sticking rolls of toilet paper and detergent pods in her tote bags.

Tote bags!  Homemakers don’t bring their own cleaning supplies.  They don’t bring lunch or aprons or anything to justify bringing tote bags into my home.   Based on my experience, those tote bags are used to put items in that they steal.

Because of HIPAA, agencies do not tell homemakers anything about the clients they are assigned to serve.  Instead, they give them a check-off list of the duties they are to perform.  That list is not based on talking directly with the client.  Rather, the list is prepared by the visiting nurse association that makes the initial visit to the home.  It’s a list that is absent the explanations of clients. For example, I have food allergies with soybean oil being the most serious and the most difficult to avoid.  It means that my meals have to be prepared from scratch.  Pre processed meals contain soybean oil, as well as most brands of tuna, canned soups, and breads.

The “meal preparation” on the checklist does not mention that my meals are not those the homemaker sticks in the microwave, or lunch meat sandwiches.   The homemaker cannot stop by Arby’s, Subway or another fast food operation and pick me up a sandwich.  Not only does their bread contain soy, but the salad dressings do also.   It means that I need a homemaker who knows how to at least watch cooking food and know when it should be stirred or checked on.

Out of the 4 homemakers sent to my home, only one knew how to use a dishwasher.  She was also the only one who knew how to watch cooking food, and the only one who can cook.  She is in her mid-30’s.  Another, who said she is 56 years old, never used a dishwasher.  Another, who is 51 years old, told me she only uses her dishwasher to hide food from her children.  That essentially meant that I had to show them how to stack the dishwasher, which meant that I had to do it myself.

Clients don’t get a chance to meet or talk with the homemaker before the agency assigns them to appear at their home.  That means that clients have to orientate the homemaker about their needs, take them on tour of the rooms where they need cleaning assistance, show them where cleaning supplies are kept.  Stuff like that.  This means that each time the agency sends a different homemaker, the client has to repeat the routine.

With the last two homemakers, orientating them was difficult because I could barely get out a word without them interrupting to tell me their personal problems, their health issues, the personal problems of their children, their parents, their friends.  One even told me what Brand of vacuum cleaner she likes to use because it picks up cat hair.  I don’t have a cat.  She does.

Although some used their own health issues to decline doing certain work, such as sweeping, they told me that they didn’t tell the agency because of HIPAA.  Apparently, they fail to understand that they still must qualify for the job and if they have health issues that prevent them from performing the work on the checklist, then they are unqualified.

It really should not have surprised me that the agencies sent homemakers to my home who are unqualified.  I experienced that agency staff doesn’t care to understand what the client needs so they can make best matches between clients and homemakers.  It’s not that they are required to perform anything on a medical level.  However, it is to the benefit of everyone involved to understand the client’s health issue(s).

The first agency had no clue about chemo patients, the most important being our vulnerable immune systems. That means, they had no concern with homemakers having runny noses or fresh flu vaccinations.  They told me what the schedule would be and when I told them I could not work with that because of chemo treatments, they offered to have the homemaker take me to chemo.  When I told them that was not necessary because I have people to take me to chemo and that my treatments are longer than the hours a homemaker is assigned to work in one day, the representative became argumentative saying that I would need to schedule my treatments on days the homemaker was not scheduled to work.  I told her I would not do that — I’m not going to juggle cancer treatment for the homemaker’s convenience.

Hours?  Yes, I said that chemo treatment takes hours.  The representative assumed that chemo was an in-and-out of the doctor’s office visit.  When I told her my average treatment time is 4 hours and once it was 6 hours, she responded, “That’s crazy”.

But, that is a state approved agency that the state trusts to assign homemakers to assist chemo patients.

The second agency was much worst.  They wanted to send a different person each day. I explained to them that my main need is with meal preparation.  As a chemo patient, having different people in my kitchen and refrigerator could jeopardize my health.   Their response?  They didn’t have one person to assign, but could send out temps until they found omeone to assign permanently.  They told me that all of their homemakers are in good health, but the first they sent was sneezing and blowing her nose.  I awakened the next morning congested and with a sore throat.

The visiting nurse association that signed me up for the program would not allow me to change agencies.  Their reason was because the agency sent me a homemaker, (although one that jeopardized my health in spite of my explanations and the agency’s response), and because of that, the agency fulfilled the agreement so it would take too much paperwork to change agencies.

According to the information I received, the state pays the agency $18 an hour.  Homemakers are paid $10 an hour which leaves the agency $8 an hour.  Of course, employer financial obligations, such as matching Social Security and Medicare, and paying Workman’s Comp, comes out of that $8.00 an hour.   Regardless of their net profit, it is my impression that they do not care who they send nor their qualifications — just get a warm body to the home so they can make the money.

As I understand it, the best situation appears to be when clients refer someone they know to the agency for hiring.  The difference between DORS and the Community Care Program, is that with DORS the personal assistant only has to complete paperwork to start working. With the Community Care Program, referred homemakers are not processed for hiring for 3 to 4 weeks.  That means while waiting for completion of the hiring process, the agencies get to send thieves and unqualified homemakers to clients’ residences.

I was told that if a homemaker doesn’t work out, just call them. However, call and tell them you don’t want the homemaker to return, and they defend the homemaker.  That is, if they answer their phone.  The agency I am assigned to has office meetings during business hours and they forward all calls to their voice mail.  When I’ve left messages, I don’t get a response until the next day.  So, what was I to do when the homemaker fell asleep, I woke her up and told her to leave and she refused?  Leave a message.

The Illinois Department on Aging does not care.  They didn’t care that I had staples from armpit to armpit with tubes running out of my body to capture fluid and blood from the surgical sight.  They didn’t care that there was someone I wanted to hire as homemaker that, according to their Agreement, they would pay until an agency provided me with the services.   Back and forth phone calls with Department on Aging personnel went on for more than three days, with none of them knowing how to comply with their own Agreement.  The Illinois Governor’s office passed my complaint about the Department on Aging to the Department on Aging.  That was in March.  I’ve not heard anything from them yet.

It’s the classic system of allowing government agencies to police themselves.

When I’m on the phone with the “case manager” at the agency, I can tell when she muffles the phone with her hand talking to others in the office.  When she is finished talking to others, she speaks in the phone saying, “Okay. Yeah.  For sure” as if responding to me although I became quiet the moment I noticed the muffling and heard voices in the background.  Clearly, she doesn’t listen to me.

The first homemaker they sent to me is a 72 year old, hard of hearing woman with two knee replacements who was afraid of falling down stairs.  (I have a three-story house.)  She was scheduled to work 4 hours that day.  I asked her to wipe down the kitchen counters, put the dirty dishes in the dishwasher, wipe off the stove, sweep and mop the kitchen.  In 4 hours, she did not get around to wiping off all the counters nor sweeping and mopping the kitchen.  She was more interested in trying to reorganize my kitchen counters, read the labels on my prescription meds, (and offering to dispose of any med that was prescribed “as needed”, and tell me about the doctrines of her church.

For 4 hours, I was up and down on the average of every 15 minutes walking to the kitchen to answer the hard-of-hearing homemaker’s questions of if she could move this, or put that somewhere else.  She even went as far as to open my kitchen canisters to see what was inside.   How did instructing her to wipe off the counters entitle her to open my kitchen canisters?   Five times, I told her that some things were on the counter so I could get them without reaching because I had just had major surgery and had T-Rex arms.   That did not stop her from continuously asking if she could move something, or put something elsewhere.   I thought “Lord, do I need to flash this woman for her to understand why I need certain things within my reach?”

The second homemaker was fantastic!  However, she could only come after 2 p.m.  That’s because she works a third shift job along with caring for her grandmother for 32 hours a week. Her third shift job opened unlimited overtime, and she gave up her position as homemaker with the agency.   I can’t blame her.  As a homemaker, the agency does not pay for overtime nor provide benefits.  At least with the second homemaker I had several weeks of rest and no worries.

The third is a 51 year old woman with two children (23 and 13 years of age).  That homemaker turned out to be a phony.   She laid out her qualifications for me but did not tell me that her agenda was having a romantic interest in my son.   When my son wasn’t around, she treated me like I was nothing more than a therapist to hear her personal problems.  When he was around, I was the center of her attention.   When she drove me to the store, she didn’t bother to close the car door.  When my son drove us to a doctor’s appointment, she was out of the car before he put the gear in park, and at the passenger’s door offering to assist me to get out of the car.

When my son was around, she asked if I needed anything or wanted her to cut my meat.  When he wasn’t around, she never asked if I needed anything.

When it came to assisting me to prepare meals,  she said that I needed to show her how to do everything.   Her mantra was, “You have to show me because everyone (blah, blah, blah) differently.”   Emphasize “show”.   That was not limited to the kitchen but included my bedroom.   I asked her to help me change the linen on my bed.    She saw that my top sheet was tucked at the foot and sides, but asked if I wanted her to tuck the sheet because “everyone makes their bed differently”.

Showing her how to do things meant that I was doing everything, including giving her the chance to walk away and get on her cell phone.

She said that sweeping and mopping hurt her back because she has fibroid tumors and ovarian cysts.   She also refused to clean the bathroom without rubber gloves.  I had given her $20 in the event I needed her to pick something up from the store, but rather than buy rubber gloves from that money, she called the agency to see if they would provide them.  They did not respond to her message.  And, she used the same bathroom that she refused to clean.

Oh — a can of disinfectant spray and a box of crackers apparently costs $20.00, because that is all she bought out of the $20 and she never returned the balance.

She constantly complained about being overweight, weighing over 200 lbs.  After I struggled to complete cooking, she was the first to sit down to eat.    She didn’t wait to see if I was going to offer her to share my meals.  She didn’t wait for Grace to be said.  That happened every day that she worked for the first week.   Eating client’s food unless offered is a violation of agency rules, but she called it a “perk” of the job.  Then I lost my appetite and stopped cooking.  The moment she left for the day, my appetite returned.   My oncologist became concerned that I was losing weight.  When she apparently realized that I was not cooking while she was there, she resigned.

The fourth homemaker said she is a 56 year old recovering alcoholic who is bipolar and has COPD, so she could not use sprays, and that included disinfectant sprays as well as cleaning products.  Her excuse for not remembering where cleaning supplies are and for talking non-stop was because she is bipolar.

She also said she receives SSI disability and works three evenings a week delivering pizzas for Papa John’s and washing dishes until 2 a.m., which was her reason for falling asleep on my sofa.   It was also her reason from dropping objects on my glass living room tables.  That meant that I could no longer trust her to clean those tables.  Before Papa John’s, her previous experience was working at McDonald’s.

When I asked her to stop talking, she acknowledged my instructions then justified not complying by saying she was upset.  She was upset with how Papa John employees treat her; upset that she has a friend who had a thousand dollars stolen from him; upset that her mom favored her brother; upset that she never stepped foot in a high school; upset that her doctor will not prescribe opiate pain meds because he thinks she’s a drug addict.  Stuff like that.

She repeated the story about her friend and the thousand dollars at least 5 times in 3 hours, first saying, “I know you just had chemo and want peace and quiet and to heal and you have your own problems, BUT I’M SO UPSET. ”  Her regurgitation of the same story and failure to comply with my instructions gave me the impression that she assumed I was in a chemo fog and would offer to give her the money just to shut her up.   Her disrespect was outrageous.  I made that her last day working as my homemaker.

She was a deceptive beggar, claiming that something was damaged and asking if I wanted her to throw it away and if so, could she take it home.   Along with that, stealing my silverware and salad plates are good indicators that she has a substance abuse problem.  After I told the agency that I didn’t want her back, she called me twice wanting to come back to my home.  Apparently, there was something else she saw that she wanted to steal.  I did not answer the phone nor return her voice messages.

The two agencies that I’ve dealt with do not drug test applicants.  Anyone who is willing to spend 16 unpaid hours watching training videos, and whose fingerprints return clear for background checks, can work for them.  That means it’s a perfect setup for substance abusers. They come into residences without direct supervision from anyone other than the senior citizen client who they perceive as a non-thinking person.  God help those who might have health issues such as dementia.

The agency became more of a headache than the homemakers.  After telling them that I was withdrawing from the program and did not want them sending anyone, they continued to call, offering to send someone the next day, or the next week.  I spoke with the manager making it clear that if I decide to have a homemaker again, I would call them.  DO NOT CALL ME.

A week ago Monday afternoon, my dog barked.  I went downstairs and heard a faint knock on my front door.  I was not expecting anyone. It was a woman.  She stood on my porch for about 5 minutes.  I have a working doorbell but she did not use it.  (Do they know that some clients might be deaf and have a system where a light flashes when the doorbell is rung that signals to them that someone is at their door?)

Because she stood there for so long, I considered calling the police.  She finally walked away from the front door and on to my drive way, where I saw she had parked.  She got into her car but didn’t pull off.  I called the police.

The moment I hung-up with the police, my phone ranged.  It was the home care agency.  They called to let me know that my homemaker was outside waiting for me to let her in.  HUH?!?!?!!  So, this wasn’t a situation where they were going to give me a chance to decline their offer to send another homemaker.  They sent one instead without first talking to me.  The rep tried patronizing me so I would let her in.  I told them that I had called the police because I didn’t know who the woman was and why she was hanging around.  I needed to call the police to cancel the dispatch but I wasn’t letting her in.

They must have called her on her cell to tell her to haul her behind out of my driveway because 10 seconds after I ended the call, she pulled off.

Now, I’m hearing from nurses and doctors about other patients who experienced nightmares with the Community Care Program.  Their health declined.  The homemakers made them nervous wrecks.

It’s time for me to exhale.

Posted on 07/02/2019, in cancer and tagged , , , , , , . Bookmark the permalink. 10 Comments.

  1. Xena, I am so sorry to hear about your experiences. This is a powerful account of egregious experiences. I truly wish there were something I could do to help. I hope you shared your story with legislators, although I don’t know if they will respond, an ombudsman, or with investigative reporters if they still exist. All I can do is send hugs and best wishes. ❤

    Liked by 1 person

    • Carol,
      Thanks so much for your concern. Actually, I’m doing better now than I was. My nerves are at peace. I did write my state senator and representative. Crickets.

      At least 3 nurses and a social worker all shared nightmare stories with me, and I told them they would be perfect advocates for positive changes to that program. I even told the social worker with my insurance company. It is my perception that they think they are doing the right thing for patients by putting them in the program, and mainly because most patients have a relative or friend to refer for hiring. For those who do not have someone to refer, they eventually withdraw from the program.

      As a told them, all of my relatives who have not retired work full-time. Some of my in-laws still have small children. My sister and nephew are older than I am. My nephew’s wife has serious health issues so he cannot commit to being in my home Monday-Friday. My sister is looking at having a second knee replacement, and my niece is looking at having both knees replaced. All of my other close relatives live in other states.

      In other words, until my diagnosis, I was the healthy one in the family. LOL! It’s not that I’m doing bad now where I need someone everyday. I’m still having post-surgical chemo treatment with targeted drugs, and it’s the week after those treatments that I feel lousy and weak.

      Thanks so much for your hugs and best wishes. Here’s returning them ten-fold.

      Liked by 1 person

  2. Wow, that is so ridiculous. I personally know people and have friends in the Rockford area, and I hope they didn’t have to deal with this. Unbelievable. I hope you’re better now.


    • Ospreyshire,
      My situation is better now, but I’ve added another cause to my plate. The way that the former homemaker operated, she can be a petty thief harming numerous ill seniors and get away with it because our state’s attorney is bias. Shoplift a $10 product from a store, and they will arrest and the SA will offer a plea bargain of paying a fine and being placed on probation for a few years. Steal $10 from a senior citizen, and the police will hem and haw and not investigate because they know the state’s attorney will not prosecute. We have a local election coming up for state’s attorney but neither candidate is worth voting for.

      Liked by 1 person

      • Good to know you’re better now, but I’m still sorry to hear about that situation. That’s on point how people can get jail time for something like shoplifting, but not open theft against a senior citizen. That’s bogus.


  3. Cancer treatments and side effects are overwhelming enough without having to deal with all the nonsense. I care for my father who lives with me. He is 95 and remarkably well. There’s not going to be anyone to help me though and I am better prepared for possible nightmares since I read your post for when my time comes. Prostate cancer and chronic lymphocytic leukaemia both early stages.


    • Carl,
      I am so sorry to hear about your journey and with all my heart, wish you the best. Here’s sending positive vibes your way and a huge healing hug. The best advice that I can give for deciding on caretakers is the moment they do not line up to your expectations, don’t wait to get rid of them. I’m still discovering missing items from my kitchen.


  4. Wow! I’m happy you’re doing better. When you already isn’t feeling well the last thing you want to do is be bothered with someone else’s inadequacy. I’ve a cousin who does this sort of work and she has to become a certified CNA.


    • Since August I’ve had two additional traumatizing experiences with personal assistants. I changed agencies again. It took the home health care agency more than a month to assign someone, and then I let that person go after one day of her non-stop talking about her life, personal problems, and attempts to pry into my business. Another week went by before the agency assigned another personal assistant. This one, I love.

      Congrats to your cousin.

      Liked by 1 person

      • I know different states have different criteria for a personal care worker but I think some things are kind of elementary. One could know to shut up around people not feeling well. But I’m happy you finally found someone useful to you. 🙂


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